Thursday, May 31, 2007

May 2007: Ab distension, Weaning off seizure meds

The tall guy with Denise in this picture is a parent from my school that works at USC University Hospital. He initiated Denise's move there during one of the times that we thought we'd lose her (the post for September 27, 2005 has those details). Our school had a fundraiser dinner, and he was there. He hadn't seen Denise for almost a year and was glad to see how much she has improved. He's one of our medical pro heroes, along with the other people pictured in the January 2007 post. Personally, I think that Topps should maket trading cards of all these people.

We paid a visit to the GI doctor this month. A couple of the most frustrating things for Denise has been the change in body shape and the slowing of the GI tract (she was described as being a "GI cripple" at one point during her ordeal). Several times, people have "congratulated" Denise on being pregnant, or asked when she's due. So over & over, Denise has had to explain that she's not pregnant, we can't have any more kids, she's just shaped this way due to secondary issues from the cocci infection, etc. etc. etc. She knows that people certainly mean well, but having lost baby Daniel during her ordeal in the hospital, painful issues get brought up over & over. So it's not just the physical that's frustrating; it's the emotional as well. Anyway, we already found out from the neurologist that the Risperdal that she was on causes increased appetite (this was handy when Denise weighed 87 pounds. Denise prefers the Abilify that replaced the Risperdal, by the way... she seems to have more energy. We also learned that the Trileptal slows metabolism (anti-seizure med). So we hope that the combo of switching to Abilify and weaning off of Trileptal (more on that below) will ease the abdominal distension.

The lab results from tests ordered by the GI doctor showed no thyroid problem (he suspected there was a thyroid problem, and we're requesting a visit with an endocrinologist next). He's suspecting that the stress of what she went through, and the duration of it all, caused excess cortisone in her system. My limited understanding is that this would slow everything down (GI tract, metabolism, everything). The good news is that things can apparently return back to normal over time. In the mean time, Denise has tried two meds to help stimulate her GI tract into working regularly, and they seem to work on & off.

She's been seizure-free for well over a year now, and the neurologist told us to cut Denise's already low Trileptal dose to half of what she was on and try to get her off of it. She went down one week ago tonight, and it takes a while to get it out of her system. So I'm supposed to keep an eye on her to see if she spaces out, stares, etc. No problems so far. Of course, this presents a slight inconvenience, as someone needs to be with her for a while while driving for a couple weeks. But I'm off for the summer soon, so the timing's great.

Next month she gets a fluorescein angioplasty of the eyes to determine in great detail what the status of the scarring is in her eyes. This will be done by the doctor that's familiar with cocci that I wrote about in the last post. We also have an appointment with the infectious disease doctor, the psychoneurologist, and a checkup of the trach scar.

I went to a funeral for a great uncle this month. I remember him most from when I was much younger, when we'd see extended family at gatherings every couple years. He was a neat guy, and funny (during the eulogy it was stated that if he were with us and saw anyone sad & somber, he'd have said, "Knock it off!"). So I was looking at the casket and started choking up. Then I transferred what was happening (his funeral) to what what could've happened to Denise. I was thinking of how close Denise was to being in that casket. Then I really started choking up. Fortunately, there was no booming voice telling me "Knock it off!" Anyway, I got home even more excited than usual to see my wife. I'm really looking forward to this summer when school gets out. After spending summer 2005 at the hospital, and spending summer 2006 doing the tail end of rehab, we're really looking forward to a "normal" summer now.

At church we happened to plop down next to this wonderful family. We didn't recognize them, but they recognized Denise. They were keeping on top of her situation from the very beginning, before this blog was even started. How? They've got connections to Arcadia Methodist Hospital where the journey began. It even turns out that a sister (in-law?) was one of the pharmacists that provided Denise's meds to the ICU. Small world!